October 2000

The Nathan Cummings Foundation

October 2000

Education Development CenterNewton, MA

Enhancing Family-centered Care for Children Living with Life-threatening Conditions

The goal of this project is to enable hospitals to provide children living with life-threatening illness and their families the quality of care necessary to support their physical, emotional and spiritual well-being. The Education Development Center (EDC) will develop educational resources that focus on improving the care provided to children and families by changing the delivery of healthcare services so that they are family-centered. To ensure the efficacy of the materials, six of the nation's leading children's hospitals will pilot-test them and measure progress toward realizing new quality indicators for family-centered pediatric palliative care. EDC will work collaboratively with the National Association of Children's Hospitals and Related Institutions, the Society of Pediatric Nurses, and the New York Academy of Medicine, each of which has agreed to cosponsor the project. These cosponsors will keep their members informed of the project's progress as a means of generating interest in the project materials and in the National Showcase Conference that will be the culmination of this phase of the quality improvement effort. At the conference, the six pilot projects will present their work to colleagues in other healthcare facilities as a means of encouraging those colleagues to replicate the pilot sites' efforts.